Written from the heart, this is the unadulterated truth of life with multiple chronic illnesses and being housebound. My life open for you to follow. Please join me

Main menu

Post navigation

A major life change

I have found myself in the past few days wondering about something that I have never considered before. Those that know me well may have even seen it in my writing, as I know when I read it back, I feel it. I’m tired, tired in a way that I honestly don’t think that I have ever felt before. It isn’t fatigue or exhaustion, it’s a tiredness that consumes you, both physically and mentally, way beyond fatigue. Fatigue has never left me just sitting doing nothing, not thinking, not feeling just stopped and worse still, with no desire to even find a way to start again. It isn’t as though I haven’t tried to fight it, or even to subdue it, but when you really don’t have the true desire to fight, it is bound to fail. I once described fatigue as….

a tiredness that grips every cell of you and then takes your soul as well, the amount you sleep or the quality of it, quite simply doesn’t make the slightest difference and it drags you down and down until it is ready to let go. There is this maddening circle that you get caught up in, all you want, is sleep, to crawl into your bed pull the covers up as far as they will go and to block not just the world but your mind and body as well, but sleep changes nothing!

When I wrote that 18 months ago, I thought that I was describing the worst tiredness there was, but even then I still had one thing that was mine, my free will. I could always muster up the will to do things, if not the energy to carry them out, but now, that will is tired as well.

I don’t know what it is that has changed, or what the cause is, but I quite honestly don’t have anything to give right now. Before anyone pipes up with the usual suggestion of depression, well pipe down, it’s not. I’m not depressed, I just have this need to stop, to go with my body and to rest in ways that right now, I don’t. When I wrote yesterday about how everything is now stalled by this list of “What if’s”, what I didn’t really say, is that it really is everything, not just those extra things. It doesn’t seem to matter what it is I want or need to do, even something that is essential, like going to the toilet, that little voice saying “Really, you want to do this?”. It always chirps up, always has to be heard. In the past month, it has grown louder and more persistent and now, I feel I need to listen to it.

So I apologise to those who come to my site daily, knowing that they will find a fresh blog every day, but that may not be the case from now on. The time has come not to hang up my pen, but to let it at least have time to refill before I ask it to write again. I have been considering this for a while, while I pushed myself on, keeping to a rule I wrote for myself, that I had to write daily. Quite simply, it has all become too much and I need to be able to take time out, time to do nothing. It has been such a huge issue in my mind, so many things to consider as it means that I am going to have to change my routine, and that scares the hell out of me.

Routine has held me together now for 9 years. It has supplied me with a structure, a frame to my day that allows me to track where I am, where I should be and what I’m going to do next. Oddly the simplest thing to leave out of my routine is my blog. To those who read it, I know that isn’t the case, but the two-hour spell that it fills, is right in the middle of my day, as I always write one day ahead. So what you are reading now, was written yesterday. This early afternoon slot would be perfect for a lot of things, especially sleep. Having said all that, it still scares me, making such a change. At this very second, I am telling all of you this, but that doesn’t mean that I won’t write daily if I feel the need. What it does mean, is there may be the odd gap as well, if that is what my body says I must do on any individual day.

I guess that I have always known that this day would come around, that I would have to give in to the tiredness, that has been growing steadily over the years. I’ve lived with it for so long, that I don’t know what it would be like to be free of it, and no matter what I do, all it does is grow. All those others, tiredness, fatigue, and exhaustion, they all sit above it, this tiredness is the one that sits in your core, never relieved, never lifting and only growing, I so wish that I had another name to call it, but no matter how I have tried, what I have read or anything else, I can’t find one. It is as though, my health has slowly been eating away at my life energy, that why I say it is at my core. With every dip in my health, it has taken another chunk and now, what is left, just isn’t enough to take every day at the same pace. I am life tired, but that doesn’t mean I am tired of life. They are two very different things, that I am sure of.

If you follow me, well you’ll know when I have written something new, as you’ll receive a notification and if you miss me, for now at least, you will still find me daily on twitter. But there is one thing I will promise, for now, I will never be gone for more than two days, more likely or not, it will only be one at a time.

24 thoughts on “A major life change”

I will definitely miss you. You’ve been a friend with such a kind and loving heart, sharing your life and guidance with me. You’ve saved me more than once. Thank you and I’m sorry you’re going thru this. If rest is what your body is telling you, then rest. You have to take care of you. A lot of people love and care about you.
((Big hugs and love))
🌻 😇

I will still be here, just not every single day. I don’t know, probably 4 or 5 times a week, I’m just not up to doing this every day for now. Who knows, it might pass, but it doesn’t feel like it right now.

If you have a problem shout, I will be on line during every day, I couldn’t live without my internet 😀

Well I should have read this before my comment on May 25 of “you keep writing and we will keep reading, you keep me going”. I am sorry, didn’t mean to make it sound harsh, if you don’t feel like writing we will understand. I know I sure couldn’t do it every day. The voice in my head is telling me to rest so loudly that I can barely manage a shower every few days. And I hate that. Showers used to be good. I find I don’t feel like doing anything lately, even thinking wears on me. So I understand that you are” life tired”. Rest, just know we will be checking on you……..

I will miss your daily posts but I completely understand what you’re saying in your post today. Your posts have helped me more than I’ve ever been able to say to you, so thank you for sharing all that you have. I hope with a bit more time away from your blog that you can rest and find better balance in the way your life is now (sorry, I’m struggling to word things well today but I hope you know what I mean). I’m thinking of you. x

Hello, as you probley know I m newish to reading your post and to me it s been someone else out there similar situation to me ( i don t do much on twitter but read ) who with Compassion, integrity, braveness and selflessly dedicated beyond belief to living a life with chronic illness and writing about it yourself. Whow! and your organisation skills stand out massivley above
Would love to meet you but I m in Lancashire. Today I ve had an assessment before full assessment for continuing health care as it is not just palliative care I think I have made no sense at all, one question can I feed my self and drink. When my hands allow I do, otherwise having a nightmare trying to look as I CAN do it with ease???? No I m not stupid but I think assessor thought I was….nor did she know what spasticity was..alot of other stuff too, I felt quite stupid. Hopefully this blog will have given you a plus side to convey the answers and how it is.After 10 mins I was tired I could not explain this either so carried on. I feel your heart is in the right place and glad your not jacking Twitter. I ll read your old ones, I read one about Crystal tips and Alasdair and loved it, loved watching it to when I was little too. Thank you and sending loads of love to you. Other than that I don t know what to say but I hope you get something positive from making your wise decision and when you add a post I ll be reading. (((Hugs)))

I love the people who they send to assess us, people who know nothing about our condition, what are they supposed to assess? It’s nuts, I’ve never understood it. I do hope though, that you get the help that you need.

Sensible decision Pamela, what is the sense in pushing yourself to the extreme of exhaustion. You have come to the point where you need the break from working yourself so hard as your body can’t cope with the extra strain you are forcing upon it. We all look forward to your next blog as and when and we will feel happier knowing that you have given yourself permission to take these breaks. Wish you well, rest plenty and am sending hugs especially for you!! XX 💌

I can fully back you on this decision You are a smart business woman and you know when the time comes to cut back a little I’m very happy you’re finally doing it and I’m positive ALL your readers will support you albeit miss daily blog posting. Have a blessed day my scottish twitter friend >^..^<

Thank you for all you give of yourself to all of us out here who read your blog. It, for me, is a huge help just knowing I’m not alone in the crazy world of MS that we live in. Knowing the feeling that you are going through (from experience), I just want you to be the one to know now that you are not alone and what you are going through IS normal and many of us have gone through it. I’ve gone months where I had to be forced to bathe or eat! I will be looking forward to your blog whenever you post but more importantly I will be praying for you every day.
((Hugs))
Heather

You don’t owe the internet a daily blog. You do however owe yourself some kindness. I hope your body stops being a jerk and that your mind gets a bit of a rest. Just do what you have to do to look after yourself xx

I totally know where you are coming from. I was in that “beyond fatigue” state all winter and am just coming out of it now. You don’t owe us or anyone a blog every day. Do what you need to for YOU. I am really happy you have come to this decision. The funny thing is, once you free yourself from the responsibility of writing regularly, it may happen more than you expect! Whenever you are able to post, I will be here, waiting to read! Get rested and enjoy life.